Thursday, January 30, 2014

A Few Things NOT to Say to Someone Parenting a Child with Developmental Delays

I'm sure there are other posts out there like this somewhere...but I decided to write my own. Dealing with a child with unexplained/explained developmental delays is TOUGH. Sometimes, well meaning or ill informed friends and family will say things...not things meant to hurt or offend, but they are like rubbing salt in a wound. Nothing makes you feel worse as a parent than people, who mean well, making statements that make you feel like you're a horrible parent, crazy, or completely alone because it just seems like NOBODY around you gets it...or cares to even attempt to get it.

So...here is a list of things you should NEVER say to a friend who is dealing with or worried about developmental delay in their child:

1. Some kids just develop slower. Why can't you wait it out and see? Why are so many parents diagnosis happy these days?

These are some of the first statements I heard from well meaning friends as I openly discussed some of the issues we were having with Faith on a Facebook thread. I knew I had several friends dealing with Autism and other developmental delays in their children, and I wanted advice, I needed to know where to go next. That was the quickest and easiest forum I had for asking questions and getting help. Faith was 18 months old and wasn't speaking a word. Her babbles were few and far between and never went beyond vowel sounds. It was incredibly frustrating to have friends who WERE being supportive and suggesting I contact my state's Early Intervention Program be verbally shut down by other friends who felt that I was being overly dramatic. Bottom line: You're NOT living with your friend. If you do have interaction with their child, its generally brief. They are the ones who are with them 24/7 and they are the ones who go to play dates, church, and other meeting places and are able to see the differences between their child and another person's child of the same age. Be supportive. Suggest they contact their state's Early Intervention program or (if the child is older) the school district for testing, if they are that confused and nervous about it. Empathize...ask questions. Sometimes, it helps that friend, who is struggling, to process things. Having to explain issues to friends will help them figure out how explain it to a pediatrician or case worker through their state's early intervention program later on. Encourage them to get help from professionals who can either put their mind at ease, or start them on the path to getting the tools they need to help their child succeed. In the end, EARLY INTERVENTION is the key to a child being the most successful. Concerns are nothing to be put aside, or to be "waited out". The sooner your friend seeks a professional opinion, the sooner they will know if there truly is a delay and be able to start working on developing the tools they need. States wouldn't be required to have Early Intervention programs if they were useless. I promise, its NOT a waste of tax payer dollars. I'm sure that for every kid that is screened and found with no problems, there are 3 or 4 that are found with delays that are helped and are given tools to move in the right direction. Even if you're right and its nothing to be concerned about, your friend's peace of mind is worth the time it takes to have their child screened to be sure there is nothing going on.

2. Maybe you just need parenting classes.

I, personally, haven't heard this one...but my sister in law has-multiple times. They are currently working out whether or not her daughter has Asperger's or ADHD. She has heard it from pediatricians and friends alike. Finally, in hearing our struggles with Faith and seeing the similarities between her and her daughter, she decided to go to her pediatrician and be a little more demanding for help. Chances are, the person that you're suggesting this too HAS taken parenting classes...several...and NOTHING seems to be working. So, the next time your friend is commiserating about the epic 2 hour temper tantrum that their child had as they were trying to get the grocery shopping done, it may be best to just say something like, "I'm so sorry! That must have been tough. I don't know if I would have or could have done anything differently." You can even offer advice of things that work with your kids, but don't be offended if your friend says, "Yeah, I've tried that. It doesn't work." Just move on... don't probe or offer more advice. Just empathize and listen.

3. Don't worry about it. They will be fine.

This phrase goes hand in hand with the first phrase...but its incredibly patronizing...even though I know that the people that said it to me didn't mean it to be. Telling a mother or father that has had their concerns about a delay confirmed NOT to worry is like telling a dog not to eat the t-bone steak you just laid on the grass in front of them...it is pretty much impossible. They are dealing with a lot of information at once, they are learning a lot of "lingo" and, more importantly, they are wondering how much this delay is going to affect their child as they move forward through their lives. Yes, that child will be fine...but what version of fine will they be? The version where physically they are healthy, but mentally they ALWAYS struggle. Will they be able to make friends? Will they be accepted by their peers in their class? Will they be able to be in a mainstream classroom? There are lots of unknowns that only time will divulge the answers to. Hearing someone say, "Don't worry about it. They will be fine." makes a very nervous and worried parent feel VERY alone. It almost seems to them that their friend doesn't care to hear their struggles. Even if you can't offer advice, you will never know how valuable a sounding board can be to someone who is struggling to parent a delayed child.

4. *Eyeroll*

I get this ALL the time... Faith inevitably will have at least 1 melt down if shopping trips aren't kept quick and simple. We do everything we can to keep her mind off of how uncomfortable she is, but sometimes we just aren't successful. Faith will drop to the ground and start her meltdown...she will scream, kick, bite,throw her shoes, do the limp noodle so that you drop her...and then...it happens...passersby stop and roll their eyes, or loudly say something like "someone needs to learn to control their kids"...I've been fortunate not to have had store security called on me to make sure I'm not abusing my children...but I have friends that have. All I am asking is that you try to be empathetic as you walk through the store and see a poor mother or father dealing with a child who is in full on tantrum mode...You don't know what led up to the tantrum, and you certainly don't know what issues they are dealing with that contribute to the severity of the tantrum. Either quietly walk by, or smile and give an encouraging look and move on. I promise, the parent is already embarrassed enough that they let it get to melt down point in public as it is...they are likely tired and frustrated. I promise, nothing will make a tired mamma or daddy turn on you faster than if you decide to put your two cents in via an eyeroll or a snide remark. You have NO IDEA how many times I want to say, "Have you ever parented a child with Autism? Then keep your mouth shut!" to these passersby (and actually have because I'm at the breaking point.) You never know what the load on someone's back is. Try to be less judgmental.

5. Its just a phase (the age) they will grow out of it.

Yes, your toddler may have had similar struggles when it comes to eating, bathtime, you name it...but just because your toddler grew out of it, doesn't mean that your friend's child will...and in many cases it takes AGGRESSIVE therapy to help a child move beyond delays.

I will use how I've been hearing this phrase a lot as an example. Faith has severe sensory issues and delays. She tries her best to cut out any and all sensory input because the world is just too much. In no case is this more true than with her eating. Faith isn't a picky eater, she is a poor eater. (Yes, there is a distinction) Picky eaters will be picky about the items they eat, but will still try new items. When they get sick of eating something, they generally replace it with something else on their list of foods they eat. Poor eaters are actually afraid to eat...(how would that be?) The sensory input from food is just too much for them. Not only do they refuse to try anything that looks different from how they normally eat it, they have a VERY short list of foods they will actually eat. The danger comes because instead of replacing those "safe" foods with another new favorite when they get sick of them, they eliminate the "safe" food when they get sick of it from their diet all together and the list of what they will actually eat gets shorter...and shorter...and shorter... As an example, for the last 2 weeks, her "safe" foods like Mac and Cheese, chicken nuggets, and hot dogs have been completely eliminated from her list. She flat out refuses to eat for most of the day. I've been lucky if I've been able to get her to eat potato chips and popcorn.

All along, as I've voice concerns about her eating habits and how her sensory issues have been affecting her negatively, I've heard friends say, "Its just the age", "She'll grow out of it", "All toddlers do that". I've tried to take heart in these ideas, but when you KNOW something isn't right, it definitely makes you feel very alone to have friends pish posh it and say that its normal. However, in working with our Occupational Therapist, I've come to realize that this SO isn't the case for us...and its going to be a very long road.

I have to make lists of yes, no and maybe foods...we have to pick a "no" food and gradually introduce it. I have to first just leave it out on the table so she can tolerate being in the same room with it. Our OT says that this process can take weeks to work...I have to then wait for her to decide to play with the food, and, hopefully, eventually, she will at least put it to her lips and give it a chance... when she refuses to eat,its not as simple as leaving her at the table until she's taken a few bites or until bedtime because she is actually AFRAID of the food on her plate.

Our OT is asking me to do the hardest thing I will ever have to do, I will have to act like I just don't care. When she wants down, I have to act like its no big deal that she hasn't even taken a bite of her food, I have to use hand over hand techniques to get her to scrape her plate into the garbage, and then make the choice as to whether I will offer her an alternative, but offer it in a way that she doesn't believe she is being catered to...this way, she will gain trust with me and my choices of food that I put in front of her so she will be less afraid of it and , hopefully, eventually give it a chance.

It will be a long road. She won't grow out of it. Its not just a phase. I literally have to teach her that she doesn't need to be afraid of the food on her plate and the sensory input that it gives her.

So the next time your friend with a developmentally delayed or special needs child talks about something that seems similar to what your child went through, instead of saying its a phase and trying to reassure them of something that you don't necessarily know is the case, be empathetic. Its okay to compare what you went through with your child from time to time. It helps to know that the struggles can be universal to some extent. Sometimes, we just need a friend to listen to us as we complain and process our struggles.

6. Why are you so bound to "label" your child? Why do you want to?

This one is the one that irks me the most because it, in general, shows the largest lack of understanding or wanting to understand. It shows that you already have preconceived negative notions about children with special needs. I get it. Many people see special needs kids and think that they don't exactly fit in... I suppose I can see the confusion as to why anyone in their right mind would want to shuffle their child towards that group; however, when you're actually LIVING the life of a parent of a child with special needs, you see this world and the value of the label in a whole different light.

No, a diagnosis won't change Faith. It won't change where she is developmentally physically or mentally.

However, a diagnosis could open up the possibility of more targeted therapies towards the form of Autism or delay she has. A diagnosis opens up doors for getting the assistance we need to continue to help her to move forward. A diagnosis will give us the ability to sit down with school administrators and teachers when the time comes to come up with the best course of action to help her be a successful student and be the best version of herself she can be no matter where she is developmentally at that point. A diagnosis gives teachers the information they need to know how to best handle her in the classroom, to help her when she struggles, to praise her when she succeeds, and to push her when she needs to be challenged.

Diagnosis isn't a bad thing. The label isn't a dirty word. We need to end the stigma that accompanies the idea of a child having special needs. EVERY child has special needs, some children have more needs than others. We need to teach our children to embrace one another, regardless of the differences that divide them, and find the ties the unite them instead. We can start that process ourselves by giving up our preconceived notions about labels.

This label I'm working towards has been a long time coming. It has been a frustrating and tiring process. Its a process that will continue even after we've figured out the cause of our sweet Little Diva's problems and have a name for it. The label is so much more helpful than hurtful. The more people that can see that, the easier it will be to teach our children that they don't have to be afraid of anyone that is different, that they don't have to discriminate against or leave out a child because of a label. That they can all be friends and help one another to succeed. The world doesn't have to be "dog eat dog." Think about how much more amazing it would be if we could teach our children to work together.

In the end, I'm sure this post sounds like a rant of all the things I'm sick of hearing...and it really is, I'll admit that...However, I know I can't be alone in this process. I'm sure there are other moms and dads out there dealing with kids with delays, disorders, and diseases that get really tired of hearing people say these same "go to phrases" over and over again.

To make a long story short, try to put yourselves in your friends' shoes. Instead of going with your knee jerk reaction, try to assess if your friend is in a place where they are going to be okay hearing one of the "go to phrases" or if its just going to make them feel more isolated and alone.

We do feel alone. We do feel isolated. We feel like our friends probably get sick of hearing us talk about our struggles and we get to the point where we try to keep our mouths shut; which isolates us even more. We start to struggle in silence rather than feel the salt on the wound when people give us the automatic "go to responses" for our struggles.

We spend so much time advocating for our child, that we end up needing an advocate for ourselves.

Be gentle with us. Support us. Laugh with us. Cry with us. Celebrate with us...we need friends who care about US...and caring about us means that you, in turn, also need to care about our child. Try to take some time to understand what we're dealing with on a daily basis.

Above all, we just need to feel like we're not in this alone. We need to feel like our friends could pick up the yoke for us and help us carry our burden if we needed them to. By saying the "go to phrases" that we hear all the time you are subconsciously sending us a message that you don't want to hear it anymore...and if that really is the case, that is fine...but if that isn't the case, dig a little deeper. Be our sounding board. Be our advocate, because, heaven knows, between therapy, doctor's visits, coordination of education plans with the school district, being wives and husbands, and taking care of any other littles we may have at home, we don't have time to advocate for ourselves. Remind us to take a break. Give us reasons to laugh. Give us reasons to forget for a few hours everything we have to juggle on a daily basis. I promise, we will do the same for you- even with everything else on our plates.

More about this crazy cutie....

Isn't it funny how in the middle of life things seem to change all of a sudden? I have a theory about that...it happens to me a lot, so I decided that my life is likely the most watched Reality TV show in Heaven...now doesn't that make you want to read more about it? Out of the blue I somehow managed to find my Prince Charming...this blog is about my new life: adjusting from my confirmed single state into the state of a young wife, and now mamma- and the crazy twists and turns along the way (because God is the perfect producer, so he is always finding ways to keep it interesting.) Join me for the ride!